#Everything but my MRI and CRP is “negative” for both diseases

[fearecia]

Jumping in here just because things caught my eye...

@snigepippi Has anyone ever assessed you for ankylosing spondylitis? It's functionally extremely similar to RA, but it starts in your spine. Specifically your lumbar spine (low back) and pelvis/tail bone. And then it likes to progress to other large joints in your body. Like your shoulders, hips, and knees. And muscle tension from the inflammation (that just will not go away) is one of the not-talked-about symptoms.

It's probably pretty obvious why I'm bringing this up in your case.

The main "never lies" symptomatic blood test that I'm aware of is a chronically elevated CRP value (C-reactive protein). It may or may not show up alongside an elevated ESR value. Most doctors will dismiss elevated values of both because those values go up anytime you are sick (they are a measure of inflammation in the body), and so regular doctors don't pay them any attention. If you've been checked for RA, they should have run these values every time they checked you for Rheumatoid Factor (all three compromise the "inflammatory panel" labs). Hopefully you have more than one time these labs have been done. Pull those records, and if your CRP is always high, get thee to a rheumatologist.

Some rheumatologists will test you for HLA-B27. While having this genetic marker is a good indication that you have AS, but just like with RA, it's possible to be negative and still have the disease.

The only definitive diagnosis for AS is with a specialized series of MRIs that look for inflammation of the bones of your spine and pelvis. They find the inflammation, it's pretty much a given.

Anyway. Just another zebra stripe to consider. There are a bunch of other symptoms (morning stiffness is one of the big ones) to consider that may fit you or not. I just recommend doing your own googling and weighing of things to see if you think it might fit part of the problem.

I probably have hEDS, have had tense muscles since I was 8 and more and more of my joints started to be in constant pain, 10 years spine, 14 years hips, then hands at 19 and now all of them. And though I'm over 40 and don't practice any stretching, I still can contort myself in any direction.

But I don't know if it's worth the energy to fight for a diagnosis? Because it doesn't seem like there is any help, other than mild painkillers and physiotherapy, and I already get that. It is so much work to convince doctors to look into the source of joint pain, as soon as they can rule out rheumatoid arthritis they stop caring. And I don't belive I will get stronger painkillers even with a diagnosis anyway.

Do you think a diagnosis is woth the hassel?

For me, diagnosis was worth it because it meant getting the correct kind of physical therapy, which is often very different from the regular kind you usually get if the physical therapist is good at their job.

Regular PT used to damage my joints more. PT designed to target hypermobility has actually helped build joint stability, retrain my muscles, and reduce some of my pain by lessening the frequency of injuries.

It’s also good to know because hEDS affects more than just your joints.

I have a lot of problems with my internal organs due to how my connective tissue is affected, and my brother, who is undiagnosed but likely affected, suffered from spontaneous retina detachment twice. When I mentioned it to my eye doctor he said, “yeah, that happens to you zebras” and now I get my retinal health assessed every six months because fuck that.

It can also be good to know because of how it affects your care during things like surgery, ranging from which anesthesia they use to the type of sutures required.

When my mother had a mastectomy, she experienced several surgical complications, including not being able to get the wound site to close, so they kept dragging her back into surgery.

When I found out, I told my dad the surgical team needed to know my mother likely had hEDS because I did, and my mother and I are carbon copies of each other. When my dad told the surgeon, he apparently said, “Well, if I’d known that, I’d have done the whole thing differently!” and finally got my mother stitched up properly and into recovery.

In that regard, my diagnosis helped not just me but a family member, but also indicated the type of care I’ll likely need if I’m ever in the same situation.

So, yes, it's a hassle to get diagnosed and some (bad) doctors will frame it in terms of “there’s no cure so there’s no point.”

But for me, it’s not only been worth it but also vital to the management of the rest of my care. And let me be clear, there are some people for whom this is just a crappy joint disorder, and they are otherwise fine. But for many of us, we’re more than just our fucky joints. We’re an entire plethora of health problems that all cascade from our weak connective tissue, and it's important more people recognize that.

So is it worth it for you? That's a you decision. But it was very much worth it for me.

I wish you luck and fewer days of pain. This shit sucks.

[crippleprophet]

looking through your AS doc ive had a bit of an "oh" moment... it explains me and my symptoms so well. i dont really know what to do next, because i have a feeling going through the nhs is going to get me nowhere.

one question: do you know if theres a link between RA and AS? my grandmother had RA and i was wondering if there could be a familial/ genetic link or if its just chance

(thanks so much for your info on AS!!!!)

:)

thank you so much, i’m so so glad it’s been helpful for you!! i actually have the unique experience of going through both the us american healthcare system and the NHS due to studying abroad, so this was my experience:

US (note that i had a really good rheumatologist, my gf looked at reviews for every doctor in the state)

i & my doctor thought from my symptoms i had AS

diagnostic blood tests for ESR, CRP, HLA-B27, RF, ANA, complete blood count, complete metabolic panel

pre-medication blood tests for hepatitis A & C, HIV, tuberculosis

urine panel

chest x-ray

MRI of spine and SI joint

after getting these tests and while waiting on results, my rheum put me on 20mg prednisone daily for a week.

results: elevated ESR outside normal range, elevated CRP within normal range, low vitamin D. everything else was normal. negative x-ray; MRI showed herniated disk but not inflammation.

because my bloodwork showed inflammation and the prednisone helped my pain and fatigue, my rheum said my pain was definitely inflammatory, diagnosed me with AS, and prescribed me Humira. i started out with injections every other week and then increased to weekly after 3 months when i still had a lot of pain in other joints. occasionally received short-term 20mg prednisone daily during flares.

NHS

got set up with a GP in mid-September, had appointment in early October for referral to continue Humira. they referred me urgently and because i already had an AS diagnosis and had been on 20mg prednisone as-needed before, they gave me some prednisone for flares (although definitely not enough to last the wait time).

received a rheumatology appointment for February 4. they said they needed to confirm the diagnosis and put me on etoricoxib (NSAID not available in the US).

got switched to celecoxib (NSAID) after 9 days because the first med didn’t do anything and gave me bad side effects (GI upset, vertigo). new med was not very effective but helped slightly and didn’t give me side effects.

blood tests for CRP, HLA-B27, hepatitis A & C, HIV, tuberculosis. chest x-ray; MRI of spine and SI joint. same results as before.

i received a phone appointment in April and they said because there wasn’t inflammation in my MRI, i was in remission and any pain i was experiencing was “leftover” from previous inflammation, but i was no longer inflamed. this was obviously bullshit because i was in the worst pain of my life and wholly unable to function. they kept me on celecoxib and referred me to physical therapy, and didn’t do anything else. i survived until i got back to the US by taking prednisone that i acquired extralegally.

so you could either try to go through the NHS and be prepared to go private later if you didn’t meet their strict diagnostic criteria (they follow the NICE guidelines) or fundraise etc to go private without going through the NHS if the waitlist was too long. personally i think it’s worth considering going through the NHS until you’ve gotten imaging and bloodwork so you don’t have to pay for that, but it depends on your time-sensitivity. i also don’t know how common it is for private UK doctors to contradict the NHS in their diagnosis.

we don’t know enough about how AS and RA work to know how they might be connected, just that certain things (mainly rheumatoid factor versus HLA-B27) are associated differently, but seronegative RA is definitely possible as is HLA-B27— AS. as with the overlap between a lot of autoimmune diseases, some people have both AS and RA, although if the true rate of comorbidity is known i haven’t been able to find it. anecdotally my grandmother had RA, too!

thank you again and best of luck to you 💕💕 feel free to send me another ask or DM me if there’s anything else i can help with!

[jewelrymkr]

Hello Luvs,

Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved first attempt and that doesn’t happen often. When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years.  We don’t want her to have to tell her story to even one more person.”  I was approved and then things got medically worse from there.  In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light.  Within seconds, our lives changed forever!

I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams. I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation.  Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries.  I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction.  I endured many hours of MRI’s and other more invasive tests. After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker.  As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.

In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners. Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it!  After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic.  I had first gone to the pain clinic for:  cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more. The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.

Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were:  “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more.  Nothing has improved very much, in those areas since that time.  As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now.  I cannot remember movies and can see the same movie several times.  If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told.  I feel very bad when I meet new friends, especially online “friends”.  When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report!  I have recently been diagnosed with Gastroparesis and you can’t see it!  Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”.  It is what’s happening on the inside, that is important.

The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”.  Since then,  it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting.  I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision,  extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.

I went to University and graduated with honors in Sign Language Studies/Interpreting.  I worked for a local school district’s Hearing impaired program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hearing Impaired person  with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data.  Now I depend on my smart phone, using:  Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.

I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!!  Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.

From Interpreter for The Deaf To Hearing Impaired, in 10 Seconds! Hello Luvs, Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability.